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Friday, December 10, 2010

From Laura Frank and Joe Manhoney at Rocky Mountain Investigative News Network. Jennifer LaFleur, Lauren Seaton, Andrea Sutherland and Jordan Wirfs-Brock contributed to this story. To find additional coverage on this topic from the I-News partners, read the I-News blog.

One out of every five residents in Colorado nursing homes wants out, and thousands of them could likely live on their own, an analysis of state and federal records shows.

But a shortage of places for the disabled to live outside a nursing home and regulations that critics say make it hard to qualify for home services mean many who want out continue to receive expensive nursing care.

Colorado – which was the birthplace of the independent living movement three decades ago – now is struggling to help disabled citizens receive care at home instead of a facility.

And that’s costing the state money.

“Long term care in general is costing the state more and more each year, just as more people need long term care services and the costs of care continues to increase,” said Tim Cortez, whom the state hired in June to reform long term care with the goals of serving more people and saving money.

In 1999, the U.S. Supreme Court said people who can live independently have that right. Keeping them in nursing homes is a form of segregation, the court has said, and that violates their civil rights. But Colorado doesn’t have the resources or the infrastructure to assist all the people who want out.

And while the overall nursing home population is shrinking, the number of working-age Coloradans in nursing homes is actually growing.

Many are people like Cliff Seigneur (pictured).

Seigneur was an assistant state attorney general, but his multiple sclerosis eventually made it impossible for him to work. He didn’t know about home care, and he wound up in a Denver nursing home at age 48.

“I don’t want to be brought out of this place in a body bag,” Seigneur said.

By sheer luck, he found out about the Denver-based Atlantis Community, the organization that started the independent living movement in Colorado in 1975.

When Seigneur contacted Atlantis, the organization had just received some rare housing vouchers. After six months of struggling, Seigneur was finally able to find an accessible, affordable apartment and the care services he needed to live there. He moved to his own apartment in Golden Nov. 29.

But Seigneur is the exception.

Today in Colorado, some 3,500 nursing home residents – including more than 360 in Denver – want out. But most are stuck in limbo.

Colorado taxpayers spend more than $1 billion each year on long term care for the needy. It’s the fastest growing part of the state budget, Cortez said. The largest chunk of that – more than a third – goes to people with disabilities.

Many of them could live on their own, with some assistance.

I-News analyzed Medicaid records obtained publicly for the first time by NPR, and found that thousands of Colorado nursing home residents can perform the basic tasks of daily living by themselves. Thousands more can do so with some assistance.

For example, more than 2,200 Colorado nursing home residents can bathe themselves. This was the daily living task for which most people needed help. Thousands more can dress, feed and move themselves.

Most of the care they receive now is paid for by Medicaid, the U.S. health program for the poor that is jointly funded by federal and state governments. Colorado’s total Medicaid budget is nearly $3 billion. Half comes from the state’s coffers; the other half is federal dollars.

If Colorado could spend more of that Medicaid money on home care – such as help bathing, dressing or with transportation – it could help hundreds of disabled Coloradans live independently.

And it could save millions of dollars.

A study last year found that when states spend more Medicaid dollars on home care instead of institutions, they saw their Medicaid bills drop by 8 percent. States that didn’t, saw their bills increase by about that much. That would be a $200 million difference on Colorado’s Medicaid bill.

An earlier study by the AARP Public Policy Institute showed the cost to support one person in a nursing home can support nearly three people with at-home services.
But if you’re a Coloradan with a disability, finding a home is not easy.

“There’s definitely a shortage of housing, in terms of low income housing and the availability of vouchers for people with disabilities,” Cortez said.

HUD, the federal department of Housing and Urban Development, says there are barely more than 1,100 housing units designated for disabled residents in all of Colorado. A recent check of coloradohousingsearch.com, a state-sponsored website designed to help people find accessible housing, shows only 13 accessible apartments available in all of Denver. Two of those have a waiting list; one is for senior citizens only.

Colorado is facing other challenges in its long term care programs.

In October, the Atlantis Community filed a complaint against the state, charging it is violating the civil rights of a client named Franklin Hicks. The complaint alleges that state regulations make getting out of a nursing home harder than getting in by requiring extensive documentation for home health services.

Also in October, state auditors said Colorado’s in-home support services program has been fraught with delays and poor management, and isn’t serving enough people. Many of the complaints had been previously noted, but not fixed, auditors said.

Cortez said state budget cuts and hiring freezes have stalled some progress.

“There’s certainly been vacancies in the department – in our long term care section specifically – and so, that has certainly created some backlog of things we’re looking at and wanting to do.”

But he said despite Colorado’s challenges, the state is still a leader in helping people leave institutions.

In January, state health officials are applying for a federal grant called Money Follows the Person. It would help Colorado spend Medicaid money on home health care. They’ll find out in February if Colorado wins the grant.

In the meantime, the numbers of people seeking home care services is expected to grow even more. As of October, the federal government says all nursing home residents must be asked if they want information about home- and community-based services that would enable them to live independently.

Whether Colorado gets the grant or not, the state needs to fix its long term care programs, said Shelley Hitt, Colorado’s long term care ombudsman.

“Despite that we have a strong history…that doesn’t matter much to the person who can’t access services or doesn’t have the funds,” Hitt said. “To that person, we still have a long way to go.”

About Me

I am full-time Mass Communication faculty at Towson University in Maryland and adjunct faculty in the City University of New York (CUNY) Master's in Disability Studies program.
I research media and disability issues and wrote a 2010 book on the subject: Representing Disability in an Ableist World: Essays on Mass Media, published by Advocado Press.
The media have real power to define what the public knows about disability and that's what I research.